Recap:
-Bella is 23 months old today!
-She has spent 553 days in hospital from birth.
-We are 1 month away from a 2 year anniversary of NOT being HOME YET.
-We are currently on day 504 in the Ronald McDonald House in Calgary, AB
- Hoping we are home before Christmas.
I have lots of updates from the past 2 weeks, but I am going to try and keep this blog post brief since I have had a request to keep them shorter (ahem ahem, Lyle...). I haven't been doing the daily diary posts this time as I have had to be in and out of clinic and the hospital unit with Bella has proven to make me quite tired in the evenings and I am usually crashing at 8pm these days, with Bella. haha But! If I am too brief with something and you would like to ask me questions that would be totally fine with me. I am in a good place for that these days. So much is happening with Bella that often I leave out information that in turn confuses people. But I am in a good place these days to answer many questions. And of course, you all know how badly I want to help other medical parents. So please follow me on facebook or email me, which ever you like. I don't update the same way in every social media outlet, I keep Bella's updates different and unique in all of them. Here are my social media contacts if you wish to follow Bella and I through other means:
Bellas Facebook page: Isabellas Mustard Seed
My facebook: Kyla C. Thomson
My Instagram: @kylact
My Twitter: @kylact12
YouTube: Hospital Mom Hacks
Bella's hashtag: #BellaBrave
Bella has been doing really well. She is talking up a storm, wow. I have had so many compliments lately about how well she speaks and how much she talks. I love love love it. Some times she rambles on what sounds like 4 sentances in a row! And she can make clear 3-4 words sentances right now. Especially when requesting food or cartoons. My favorite is when she says, "Momma apples ya?" She's still loveing apples.
Bella is still doing wonderful with her walking with the push cart. She is faster now and can turn the cart on her own when she gets stuck. Its also quite cute to here her say, "I'm Stuck!" when she runs into something. I've tried multiple times to coax her into walking on her own but she often stands, balances, gets excited and shouts, "No Hands!" and then plops down on her butt. I only want to try on weekends now, when Lyles here. I rather him here for her first steps unassisted. Its kinda funny though since he has said even if Bella does start walking...just don't tell me. As funny as that would be, I'd be too excited not to tell him. But we will see what this weekend brings...maybe her first steps!
Bella had another wonderful visit with Grandma Davis. Bella loves grandma and snuggles grandma and does not mind at all now, if momma is away while she hangs out with grandma. I think she also knows how well grandma takes care of her doggy Jersey until we can come home.
To be honest this could actually be suregy #10 or #11, I actually would have to look back in Bellas Bead Journal to be absolutely sure, but I'm pretty sure its #9. She's had a few surgeries for central lines both in Saskatoon and Calgary that I can't remember her exact total number of surgeries but its 9 for sure.
Its funny, I still remember the way I was for Bella's first surgery. I remember not being scared one bit. I remember the surgeon actually commenting on my poise. If I could describe why, it would be to say, "There's no reason to be scared." There's just no choice, you just be brave and secure, not naive, but have faith filled hope and thats it. God is protecting her and I don't doubt that. I have faith every time and I choose to show no fear, especially for her, for my Bella.
The Cancelled Part
Bella is no longer getting the ivad port line under her skin. She will remain with her double lumin broviak. It is bittersweet. The port meant less blood work for Bella and a step towards going home. Because of the Hemalytic anemia, blood work has had to be way too often and that just can not happen with a port. A port is meant to be accessed once or twice a month, not once or twice a day, like her Broviak can and is right now. Sadly this means I continue to wrap her up in saran wrap for every bath and she can not going swimming yet. The good news is she can still go home with her Broviak and as long as it remains very clean and NOT infected, she can just keep it as long as possible.
The MRI and Nerve Conduction test for Bella's wrist was cancelled. The new rules in the hospital are that they do not transport patients while under anestheitc. The MRI is on the 1st floor and the OR is on the 3rd floor. Regardless Bella's wrist doctors have decided an ultrasound of Bella's wrist may prove to be more effective anyway, when determining what sort of nerve damage Bella has there. The MRI would of actually been most likely too long with unconclusive results anyway. They thought even if it took an hour to follow her nerves through the MRI, it may not actually show them what they need and there for, not worth the risk of Bella being under for a solid hour.
The Skin Biopsy
Bellas Geneticist wanted the skin biopsy as back up. They had figured there was enough of her "old blood" (her blood before transplant) saved in the lab in Winnipeg but a skin biopsy now would prove as back up just incase. Genetics amazes me, its crazy science. Its a crazy science that Lyle and I need in order to have a second child, SCID free.
A Saskatchewan Resident on Bella's Case in Alberta!
At first I snickered and rubbed my hands together like Dr.Evil, threw my head back and laughed..."BUahahaha!! I will get you my precious." lol And then I told myself, "Self...be nice."
I thought, I better not hurt her too bad, I need her now, as a tool to advocated for SCID screening in Saskatchewan and the awareness of the mistakes Bella endured in the Saskatoon hospital. She was a Resident doctor working with Bella in Saskatoon, so of all people, she can see the "then and now" and hopefully help me DO something about it. If anyone can help me out, whats most important through all of this is medical teams realizing that if SCID screening was in place in Saskatchewan when Bella was born, she would not of had to spend so long in hospital and go through all that she had that 1st year. 2 years away from home could have only been 6-9 months if she was diagnosed at birth. If anything, I want to prevent this from happening to another Saskatchewan family. It's a miracle Bella survived 11 months before she was diagnosed. IF she had died before then, we would have never known the real reason why.
So instead of grilling this resident on the horror of our 8 months in Saskatoon, I knew I needed her on board with what I needed her help with. Thankfully we have had wonderful converstaions and she is more than willing to help me with all of this, as an asset knowing Bella's Saskatoon history.
The hard part was swallowing my anger. The second that Bella's BMT doctor "introduced" me to her in the hallway, a few weeks ago... I immedietly knew who she was. A memory from this resident working with Bella in Saskatoon is burned in my brain...because it was ruthless. I have great assumption that we are but a spec of memory to her, as I had to remind her about quite a lot of Bella's history and WHY she needed a Bone Marrow Transplant.
The Memory
It was May 2014, about a month before we came to Calgary the first time, thinking Bella's only issues were with her bowels and the effects of having Hirschprungs Disease. This memory happned after 3 needless, uneffective bowel surgeries and a Septic Shock episode that almost killed her in April 2014. We are now in a room on the PEDS ward, the Saskatoon surgeon was stumped after the 3rd bowel surgery did not fix Bella. My daughter was so destended her abdomen looked like Jupiter, she had a tube down her nose and throat sucking anything out of her stomach so she wouldn't vomit repeatedly as they still assumed she had a blockage somewhere that they couldnt find...
And this resident walks in before daily rounds that day.
Once again I'm diligently standing at my daughter's crib side trying to hold her, comfort her while hooked to countless tubes and lines. Confused and scared and tired I try to go over every possible next step they could try, with the resident. Bagging her to think of something they haven't thought of yet that could work.
The convo got heated as she could not answer my questions and my knowledge at that time proved to be greater than hers so I could tell she started to become annoyed with me.
Finally she abruptly said 7 words that left me in shock and despair...
"There is no magic pill for Bella!"
And she walked out.
Guess what lady!!! There was, and its called a Bone Marrow Transplant!!
Aaaand BOOM goes the dynamite.
I'd give anything to rub that in her face, but I can't, that's not me. Like I said, I need her alive...hahaha, to help me advocate for SCID screeing in Saskatchewan.
Wow...I'm not following Lyle's "make the posts shorter" request at all. ha ha Sorry hunny. I'm sure everyone's grabbed their glass of wine by now to pit in for the remainder of this post. :)
I can't tell you how much relief I feel with finally using these outlets. The blog, Bella's page, my channel all make me feel much more purposeful. Like I've said before, I could cry, whine and wail about the hardship and mistakes my daughter has had to endure...OR I could use my writing skills to get as much info out there as I can, to help others and prevent pain for others. As long as I am writing, I know I am helping someone and that matters.
I sometimes wish I would of known to start writing like this since the first step into hospital care for Bella. But I couldn't of ever known. That first year was month by month, thinking we were going home every other week. I was in no place to write like I am now. I've actually started my ideas for a book. Yes, I am writing a book. Who of all of you would buy it?!?
I've found a way to remember and write about as much as I can from our first year in hospital and this second year. It's going to be great, but definetly an ongoing project for me, for now. So stay tuned.
Timeline Update/ Overcoming Hemalytic Anemia
In a nut shell, the Hemalytic Anemia that Bella is battling has set us back at least 5 weeks from a going home date. The 1st week of trying steroids and the 4 doses of the Ritux med that takes 4 weeks. Not to mention the daily blood work. Good news: Bellas hgb is starting to stabalize above 80! That means the $10 000 Ritux med is working and with the support of the steroids is stabalizing Bella's hgb. Her last dose of Ritux is this coming Monday where Bella will have to be in a clinic room for the 6 hour infusion of the med. It will be her last infisuion and then they begin to ween the steroids off.
Bella's Calgary BMT team has spoken with the team in New Castle, England who is aware of Bella's case. They have given our Calgary team great insight and support. They have told us they have actually seen this before in some SCID patients. They have also said that every patient has responded differently meaning they arn't sure if the Hemalytic Anemia will take a while to fix or if this last dose of Ritux will be it. Its looking good for Bella seeing as she is not on her last dose of this med yet and already showing stability above 80 this week.
Like our Immunologist Dr. Wright has always said, we hope to be home before Christmas. I'm still grieving from the mentions of us being home by the end of October.
Bella's Immunizations Timeline
So the Ritux med is not just a set back for a going home date but also a set back for Bella's Immune System to have a chance to show us its working on its own. The BMT med Cyclospoirn that Bella is being weened off of takes about 3 months to get out of her system. So for example, until that med is out of her system we don't see what Bella's Immune System can do on its own, there for we can't test it yet, therefore no immunizations for her yet, therefore keep her on protective isolation... ugh.
Well, this Ritux med takes longer to get out of her system, like 6-8 months longer. This was very frustrating news. Both of these medications are what supress Bellas Immune System right now and make her vulnerable and unable to fight viruses yet. So we wait.
The cyclo med should be out of her system by February 2016. The Ritux med should be out of her system hopefully by May 2016. So its really another 3 month set back in terms of testing Bella's Immune System and for example, allowing her to play with friends and be around children.
So hopefully in Spring 2016 Bella's counts show that her Immune system is ready to be tested and then we can start her Immunizations and begin leading more of a normal life by seeing friends and family more often. She will be 2 1/2 years old by the time we start her immunizations.
So given that information, all the more reason to remind everyone, that for those who want to visit Bella between now and well...the rest of her life, you must have the flu shot.
Also, the reason why myself and anyone around Bella can NOT have the nasal spray version is because the spray is a live virus that is actually contagious for 10-14 days post spray. Thankfully I can get my flu shot at the Ronald McDonald House for free as they have a clinic for the families here. And they do not allow the nasal spray in the house here.
1 Month Until Her 2nd Birthday
Oh boyee... So she's 2 years old in one month. I want so badly for this to be a celebration for her at our home but that option is not looking so hot. I get a bit of anxiety around planning her birthday. I want for it to be such an amazing experiece for her because she has had to live in hospital for 2 years but at the same time she's 2 and well, not allowed to be around crowds of people or other children. I have a few ideas in mind for December 6th 2015, that I'm working on. One of which being a come and go celebration where I book a room at the hospital. I like this because then all of our Calgary friends and family can stop by and see us and see her before we go home to Saskatchewan. As well as her nurses and medical teams from Unit 1, 2 and 4 in ACH.
I'll keep thinking on this and keep everyone posted on the plans we decide on. Either way I know a lot of friends and family will show her love on this day, so I'm not worried about that happening. :)
So I'll leave you all with a link to a video I posted on my YouTube Channel of Bella and Lyle enjoying some reading and singing before bedtime. Bella's singing almost melted my heart just as much as her giggles in the "apple" video. She absolutly loves animals and knows so so many of them and the sounds they make. And like she shows in the video, she knows when to chime in on her part of singing during Old McDonald's "EI EI Oh" song.
With a "Baa Baa" here and a "Baa Baa" there, goodnight everyone, and thank you for following our story.
Video Link:
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